Conflicts of the Heart

Commentary by Director Paul S. Casamassimo, DDS, MS

June 2015

A strange thing is happening in the community of families, advocates, and pediatric dental providers serving those among us who have special needs. What once could be described as a system working together to help those with disabilities achieve oral health now seems to have members pitted against one another. At risk is the breakdown of a care system that seemed to work, at least for children. For example:

In one state, a pediatric dentist, who had for decades cared for those children with special needs whom no one else would see, was fined by the government because of a parent’s disagreement with the dentist’s experienced recommendation to treat a preschool child with autism early rather than later in the day.

Elsewhere, a pediatric dentist was asked to provide an interpreter for a child with a sensory disorder. He did so, even though that person sat in the waiting room and did not participate in the treatment session. Yes, the pediatric dentist paid the cost for the interpreter who was, by the way, a neighbor of the child’s family.

In still another example, a young man with autism had not been seen for several years, in spite of repeated notification of the family and the pediatric dentist’s willingness to continue to see the patient. The patient had been conditioned to receive care as a younger child. Now a strapping young adult, he resisted care, and in the process, dislocated the dentist’s shoulder.

In another state, all pediatric dentists received a cryptic letter warning them about potential state board action if they continued to see patients with special needs who had attained adulthood, because specialists are required to limit their practice. The warning proved false, but the effect on the state’s pediatric dentists has yet to be determined.

Other stories abound, and the fragile safety net that brought those who care deeply for patients with special needs together may be fraying needlessly. That safety net has taken years to develop, and in addition to its successes in getting care to patients, it has contributed to significant awareness and legislative success for those with special needs.

What’s up with this? Is it just a necessary resetting of the system? From the pediatric dental standpoint, we are still doing things largely as we have in the past, making use of immobilization, medication, and parental assistance, tempered over time through scientific gains. Our specialty continues to modify its guidelines to keep pace with a better understanding of behavior, health issues, and parental desires. On the other hand, social and advocacy policy may have outpaced our ability to adjust. For example, our position on protective stabilization continues to evolve to try to keep up with its use in other health and behavioral arenas. This is a daunting task as we struggle with the various concepts of restriction in the treatment setting, habilitation, post-operative care, and the like.

The application to dental care of concepts of disability rights presents still another challenge, as illustrated by a previous example. How do the dentist’s knowledge, experience, and practice considerations meld with the needs of individual patients? Often, both are complex sets of variables better reconciled at the dentist-family interface than within the disability rights legal system that may necessarily be adversarial. The need for education of the legal arbiters on oral health considerations remains significant and represents an opportunity for the Academy and other oral health organizations that advocate for patients with special needs.

Finally, for those of us who are pediatric dentists, there is the thorny issue of our specialty’s definition:

"Pediatric dentistry is an age-defined specialty that provides both primary and comprehensive preventive and therapeutic oral health care for infants and children through adolescence, including those with special health care needs."1

The history of this definition merits some discussion. Few know that in the late 1980s and early 1990s, when the American Dental Association reviewed specialties, pediatric dentistry was decertified. We were the last specialty to undergo scrutiny and the pundits felt that the prosthodontists (restoration), oral surgeons (extractions), endodontists (pulp therapy) and general dentists (preventive and diagnostic services) could handle most children. Germane to this commentary is that the same pundits also felt that residency-trained general dentists could handle all children and adults with special needs. In an appeal (perhaps accompanied by subliminal crying) wiser heads prevailed. We remained a specialty.

One issue remained, which was the care of special needs patients, particularly adults. Even then, pediatric dentists were caring for most of these patients, and our skepticism about mass transition of young adults with special needs to the general dental community prompted the vague last clause in the definition. That clause has been interpreted as referring back to "infants and children," but actually was meant to be inclusive of "those" patients of all ages with special needs. Twenty-five years after the death and resurrection of our specialty, we remain 100 percent committed as a specialty to care of patients with special needs2 and still are plagued by our inability to find those general dentists we were assured were waiting for our emerging adult patients.3

It is time for a stakeholder conference to bring together those who care and are charged with protecting that care – the dental community, special needs advocates, government, medical community, and parents – to share, and hopefully, come to the common ground of workable solutions to the greater issues that may be threatening our ability to care for "those" patients with special health care needs.